The paperwork never ends The Archives
May 16-31, 2000 Archive Index

Jon 5-1     seeking e-mail address owners
Jeanette's 5-1 reply to Joe S' 4-30     misdiagnosed CHFers
Ginger 5-1     calf pain, upcoming test & more
Gus R's 5-1 reply to Gloria's 4-30     meds timing, beta-blockers & more
Jon's 5-1 reply to Gus R's 5-1     quality of life versus longevity
Frank S' 5-1 reply to Janet's 4-30     PVD & more
Lynn M's 5-1 reply to Virginia P's 4-25     chemical stress tests, CAD & more
Tom S' 5-1 reply to Kathy S' 4-30     quenching that thirst
Carolyn H's 5-2 reply to Kathy S' 4-30     quenching that thirst
Phyllis A's 5-2 reply to Janet's 4-29     chemo-induced cardiomyopathy
Sally 5-2     St. John's wort and heart meds question
Jon's 5-2 reply to Sally's 5-2     one known interaction
Claire's 5-2 reply to Gloria's 4-30     similar meds - staggering doses, side effects
Judy's 5-2 reply to Janet's 4-29     neuropathy, potassium levels, blood testing question
Dee L's 5-2 reply to Kathy S' 4-30     quenching that thirst
Maureen Mock 5-2     thank you for the advice
Lynn M's 5-2 reply to Frank's 5-1     PVD & CAD
Trisha C 5-2     restored heart function & Coreg
Walt 5-2     Coreg dose & CoQ10 questions
Tom S 5-2     freebies for those on Disability
Jon 5-2     seek Robin W's current e-mail address
Sharon 5-2     SSD, SSI calculation questions & more
Tom S' 5-3 reply to Sharon's 5-2     SSD, SSI back payments due
Donna Z's 5-3 reply to Jon's 5-2     will try to find Robin W
Delores Price 5-3     my husband died & more
Tom S' 5-3 reply to Delores Price's 5-3     our condolences
Billie Jo 5-3     SSD &SSI, recipes, part-time job & more
Christy M's 5-3 reply to Sharon's 5-2     SSD &SSI
Jon 5-3     Julie Kendall died April 18
Carolyn B 5-3     low sodium pickles round here
Gwen 5-3     tired of being tired & more
Leland Y 5-4     getting plastic wallet cards with medical info
Jack 5-4     making low sodium dill pickles
Heidi J 5-4     achieving balance
Jon's 5-4 reply to Heidi J's 5-4     naw, I'm just tired
Tom S 5-4     Url & my e-mail is cleared up now
Jon 5-4     free supplements for CHF & trial
Tom S 5-4     a message that struck me
Claire's 5-5 reply to Gwen's 5-3     dealing with constant fatigue
Gus R's 5-5 reply to Sharon's 5-2     SSA, SSD & SSI
Claire's 5-5 reply to Tom S' 5-4     liked the letter
Al H 5-5     rest of the letter
Al H 5-5     more of the letter
Tom S' 5-5 reply to Gus R's 5-5     SSA & the letter
Jana B 5-5     Jerry Vigus died!
Ginger 5-6     I'm back at chats now! & more
Tony P 5-7     stomach exercise question, update
Jon's 5-7 reply to Tony P's 5-7     stomach exercises
Hope M 5-7     echo & Aldactone questions
Janet's 5-7 reply to Gwen's 5-3     pity parties, to Frank & pickle tip
Jennie 5-8     what is wrong with me?
Jon's 5-8 reply to Jennie's 5-8     some suggestions
Karen K's 5-8 reply to Hope's 5-7     diuretic doses & more
Jon's 5-8 reply to Karen K's 5-8     diuretic doses & sodium levels
Don J 5-8     day time drowsiness problems
Randy B 5-8     post-transplant CAD questions
Tom S 5-8     national parks & SSD
Jean C's 5-9 reply to Don J's 5-8     day time drowsiness
Brenda H 5-9     I think CoQ10 is helping me
Ben B's 5-9 reply to Randy B's 5-8     plaque, caths & doctors, & more
Ginger's 5-9 reply to Don J's 5-8     depression, CHF, drowsiness
Ginger 5-9     someone needs help with sleep during travel
Sarah F's 5-9 reply to Don J's 5-8     depression, suggestions
Beverly C's 5-9 reply to Brenda H's 5-9     CoQ10 brand questions
Frank S' 5-9 reply to Brenda H's 5-9     CoQ10 has also helped me
Sharon 5-10     SSD-SSI payments
Phyllis A's 5-10 reply to Hope's 5-7     Aldactone & more
LeeAnn D 5-10     update - good news!
Joe S 5-10     update - good news!
Pamie R 5-10     update & more
Jana B 5-10     getting into national parks free
Donna Z 5-10     update, support group start-up questions
John Len's 5-10 reply to Jana B's 5-10     park passes
Jon's 5-10 reply to John Len's 5-10     maybe,...
Frank S' 5-10 reply to Beverly C's 5-10     CoQ10 products
Roger G's 5-10 reply to Claire's 5-5     hang in there
Ginger 5-10     Freddy B, update & more
Rick M 5-11     good CoQ10 deals
John Len's 5-11 reply to Jon's 5-10     that's me!
Ken K 5-11     seek some advice
Frank S' 5-12 reply to Rick M's 5-11     CoQ10 forms versus prices
Ginger's 5-12 reply to Ken K's 5-11     some starting places
Gatha E 5-12     found new heart book I really like
Betsy's 5-12 reply to Ken K's 5-11     it's good to face your feelings on illness
Barbara's 5-12 reply to Ken K's 5-11     coping with depression & illness
Frank S 5-12     CoQ10
Heidi J 5-12     lost my address book, guys
Jon's 5-12 reply to Frank S's 5-12     CoQ10
Madelyn J 5-13     update - good news
Brenda 5-13     Losartan questions
Jon's 5-13 reply to Brenda's 5-13     does anyone here take Losartan?
Rieale's 5-13 reply to Gatha E's 5-12     I also love that book!
Jack's 5-13 reply to Frank S' 5-12     CoQ10

Jon, May 1, 2000 - Hi everyone, If anyone knows who has or had these e-mail addresses, please contact me: and Thanks, Jon.

Jeanette's May 1 reply to Joe S' April 30, 2000 - Hi Joe, You're not alone. I think most of us were misdiagnosed before CHF hit us. I know I was. My regular doc who had been our family doc since I was little, screwed up and thought I had asthma or bronchitis or pneumonia but never took a chest x-ray. He just put me on an asthma puffer and was done. Because most symptoms are similar to CHF, it is hard to diagnose unless you have a chest x-ray. Why docs don't do that at first is beyond anyone's comprehension. Needless to say, I told my doc to go fish. He almost killed me. I am sorry you were one of us that had to go through the ordeal of being misdiagnosed. It's not easy and not fun at all but you are not alone and I hope things are going better for you now. Always praying for ya, Jeanette.

Ginger, May 1, 2000 - Hi, Thanks for all the replies about calf pain. Being as I do have lower back problems, it is easier to let my ortho doc do his MRI to see if it is related but it's probably not. So when it's ruled out this week, it will be on to the cardio doc to see what he has to say about it. I am not to encouraged by what I have read here but I am going to try to get an answer from one or the other. If we have it, there has to be a reason. It is not coming from no place. My cardio doc so far has always taken what I tell him as fact and does try to find a reason for whatever it is at the time. We will see if he does on this or does what you all have been up against. I will let you all know what happens.
     My MRI is tomorrow and I should get the results Friday. I am not looking forward to going on this journey, knowing I may end up with no answers but I am doing it anyhow. Jon, you're right about the, "If ya don't have cancer, you don't serious chronic pain" attitude. So far though, giving me pain pills is what they do and they do not work on the calf pain, just my back. Ok, I am done venting. It will be interesting to see if my doc disregards the calf pain after I print all these replies about you all having it too, and give it to him! :-) Hugs, Ginger.

Gus R's May 1 reply to Gloria's April 30, 2000 - Hi Gloria, As I've said before, I am not only not an expert on anything, I'm nuts. So take anything I say with that in mind, and never make any changes in your meds that your dox don't authorize, no matter who thinks it might be a good idea. Many heart meds need to be started and stopped under close supervision, even sometimes while in a hospital. Medscape's DrugInfo has this to say about metoprolol:

"Abrupt withdrawal of beta-adrenergic blocker therapy may exacerbate angina symptoms or precipitate myocardial infarction in patients with coronary artery disease. Therefore, patients receiving metoprolol (especially those with ischemic heart disease) should be warned not to interrupt or discontinue therapy without consulting their physician."

     At one time I took both metoprolol and Prinivil, and in looking up my records, I took Prinivil twice a day and metoprolol once a day, as you are. Like you, I took both in the morning but I took them 3 hours apart. I can't remember if that was the dox idea or mine but that's the way I did it. I'm now taking Betapace/sotalol (which is a cousin of metoprolol) and Prinivil, and am taking them the same way. Again, I don't know where this schedule came from but my doc is aware of it.
     Regarding Prinivil, my doc wanted me to take 20mg twice a day. I started at 10 and went up to 15 and then 20, but didn't stay with 20mg. I had increased dizziness with the higher doses and absolutely no energy. I almost had to carry a stick to beat myself with to get me to move. I am now taking 10mg twice a day. Jon can correct me if I'm wrong, but I think this is a classic case of feeling better, with the possible cost of a shortened life span. Again, my doc knows about this and he didn't approve but admitted that the final decision was mine. He knows I'm nuts. :-) Best wishes, Gus R.

Jon's May 1 reply to Gus R's May 1, 2000 - Gus, You're crazy like a fox. ;-) I had a similar discussion with my CHF doc late last month. I stopped both digoxin and Aldactone last year due to side effects. He wants me to try Aldactone again at half the dose but if I am going to take either one, I am going to try digoxin again. He exclaims, "But digoxin doesn't decrease mortality!" I fired back that it's my decision and right now, I'll take quality of life improvement over longer life, and digoxin may improve how I feel. He agreed that it's my call but he wasn't happy. So it goes. Jon.

Frank S' May 1 reply to Janet's April 30, 2000 - Hi Janet, Arterial disease usually causes circulation problems for older people and is most often associated with plaque buildup and the stenosis that occurs. It can cause claudication (pain) in the skeletal and heart muscles. People who are at risk are smokers, diabetics and those who consume large amounts of saturated fat. You should really take exception to your doctor's comments about your calf pain being neuropathy. Since I suffer from both peripheral neuropathy and peripheral vascular disease, I find his remark to be ludicrous to say the least. Anyway, the treatments are varied, and without early lifestyle changes the problem of clogged arteries only gets worse. Medicines may be ineffective and vascular surgery is an option of last resort, however interventional radiology has proven to be an effective treatment for some. I wanted to talk about this disease because most people who suffer from PVD are not aware that they have PVD and when they find out, because most doctors are cluless, they are not treated properly. An arterial doppler study is definitive, but the way to cope with the pain is just one step in dealing with this very significant problem. Should anyone want more specific links, you know where I am. Frank Smith.

Lynn M's May 1 reply to Virginia P's April 25, 2000 - Hi Virginia, Sorry I took so long to respond. I thought that somehow my post didn't make it until - tah-dah - I found The Archives. You described that you had a PET scan done that day. It happens that I'm scheduled for a sestamibi scan in July, which is quite similar, just probably a different isotope. I've had two of them before. One of my cardiologists insisted that I have it done because my EF had plummeted from 39% in September of 1999 to 24% in March of 2000. I hadn't mentioned the increasing angina because when I saw her it wasn't that much of a problem. Actually, I thought the chest discomfort was mainly from coughing so much from the CHF with a "cracked" chest in June of 1999 for a CABG, until the pain started to radiate. Ooops!
     Those of you who posted about wheezing and coughing and being treated for asthma, I walked around thinking I had asthma too, despite having had an episode of pulmonary edema last summer so bad that I had to go on the ventilator for 3 days. I had even gotten an Rx from my PCP for an inhaler. We all found out what was wrong when they reread a previously misread chest x-ray and did an echo. Eeeek! Now that most of the fluid is gone out of my lungs, I no longer wheeze and make funny noises although I still cough, gasp and breathe in amazingly unusual ways that wake me up at night. Anyway, being that I can't have any more CABGs or angioplasties, I still don't see much use for having the sestamibi scan. Even if it shows a reversible defect as they call it or more infarcts, it'll only be of academic interest, in my opinion. IMHO.
     An aside to Jon who also replied: No, you didn't rain on my parade by saying the angina could be encroaching CAD. <g> I've accepted all of this, the CHF, the CAD and the, ahem, challenges they pose. I still have a lot of pictures to draw, jokes to tell and laugh at, and I try to enjoy each day as it comes. Lynn M, the Princess of Rales.

Tom S' May 1 reply to Kathy S' April 30, 2000 - Hi, I found 2 things that act as pretty effective thirst quenchers. One is Hall's cough drops, which seem to last longer than candy, and crushed or whole ice cubes. It's a matter of adjusting to having something cold in your mouth.

Carolyn H's May 2 reply to Kathy S' April 30, 2000 - Hi Kathy, I am restricted to 1.5 liters of liquids per day. To help with excess thirst I buy Sweet and Lo Sugar Free Fruit-Flavored candy and also I suck on ice chips and chunks. I have a small cube ice tray that I keep filling and freezing. It is amazing what a little amount of water you will use to make the small cubes but it does satisfy your thirst because you are intaking the liquid so slowly.

Phyllis A's May 2 reply to Janet's April 29, 2000 - Hello Janet, My name is Phyllis. I have not been posting lately but I always read the board. I had chemo for breast cancer too and that is when my problems started. My oncologist would not admit that these side effects are truly from the cancer treatment. I had 5FU, Adiamycin and also radiation treatment that I went to 5 days a week for 7 weeks. Chemo I had for 6 months, 3 before surgery (mastectomy) and 3 months after. I thank God every day that I'm alive but now I am getting all those deadly side effects. I wrote a book about my experience and about the side effects and to get the word out about early detection and also to make docs believe us. God bless any more questions you can e-mail me cause I could go on and on. God bless.

Sally, May 2, 2000 - Hi, On the news tonight I heard a report stating that St. John's wart should not be taken with certain heart medications. Does anyone know which ones? Thanks.

Jon's May 2 reply to Sally's May 2, 2000 - Hi Sally, They may have added more interactions lately but one article on it can be found at this page. If anyone knows of more information on the subject, please let us know! Jon.

Claire's May 2 reply to Gloria's April 30, 2000 - Hi Gloria, I have been on 50mg Toprol, 90mg Imdur, 60-80mg Lasix, 40mEq K+, and avalide (150mg avapro plus 12.5mg HTCZ) for one year now. After a lot of juggling, I discovered that for me it's best to take Imdur and Toprol at bedtime with a very light snack. The Toprol can make you nauseous and it also made me more tired than usual, if you can believe that! Taking it at night really helps me. Talk to your doc and see what he says. Good luck! Peace and love, Claire.

Judy's May 2 reply to Janet's April 29, 2000 - Hi Janet, I am another CHFer with neuropathy. I was also told it was caused by chemo and there's nothing that can be done for it. Several people in my cancer support group also have the same complaint but and this is a big but, I had a blood test taken a couple of weeks ago and my potassium was too high. The doctor cut my spironolactone from 25mg daily to 12.5mg, and my legs stopped hurting. My next blood test showed a normal potassium level and my legs feel better. I also take 40mg Lasix once a day, 50mg Cozaar and 12.5mg Coreg twice a day. Does anyone else think that the doctors don't pay enough attention to too much potassium?

Dee L's May 2 reply to Kathy S' April 30, 2000 - Hi, There is a sugar-free gum for dry mouth that my doctor recommended, call biotene. It works in quenching my thirst. You may purchase it in the oral hygeine section of drug stores. Try it.

Maureen Mock, May 2, 2000 - Hi, I want to thank all who responded to my cry for help going through the teenage thing. It means so much to have such wonderful people at our fingertips for support, isn't it? I am so relieved that the monsters will eventually return to their former state. I just pray that God gives me the strength to see them through. Thank you all again so much. Peace and love to all, Maureen.

Lynn M's May 2 reply to Frank's May 1, 2000 - Hi, I'd like to add my voice to Frank's and others about peripheral vascular disease. I've seen info on the web that says it is so common for folks with PVD to also have CAD that doctors should check every PVD patient to see if they also have CAD. The PVD symptoms often show up first. Despite having had leg cramps for years, my PVD wasn't diagnosed until they tried to do an angioplasty after my first heart attack. When they couldn't get a femoral pulse and had a hard time getting the catheters past the blockages in my iliac arteries, they called in a vascular surgeon the very next day. I eventually had an abdominal aortal-bifemoral bypass, which made a dramatic improvement. So, be sure to have those leg pains investigated, especially if you have CAD. Lynn, Princess of Rales.

Trisha C, May 2, 2000 - Hi all, Long time, no type, but I've actually been quite normal and living life. When I first found Jon's Place and went on Coreg, I asked if anyone knew whether or not I would have to stay on it for the rest of my life. No one knew, but now I do and thought I'd share. I do! My doc thought I was all better and started weening me off my heart meds. When I got off Coreg (the last to go) I went downhill fast! He thought that we had come off it too fast so I went back on 12.5mg twice a day and weened at 3.125 every 2 weeks. Once off, same thing. So now I take 12.5mg twice a day and all's well with the world. So for all those who ask, "Is Coreg worth it?" I'd have to say yes. That's from someone who had to titrate twice. Love and best wishes to you all. Keep fighting the good fight, Trisha C.

Walt, May 2, 2000 - Hi All, I just found Jon's site today. What a great deal of valuable information! I am surprised to learn I am not alone in having been misdiagnosed. For 3 years, I was treated for asthma and GERD (acid reflux). I finally got to the point where I could not get enough breath to walk a single flight of stairs. I went to the ER in 12/99 and was diagnosed with DCM that week. I had a cath, an echo, and a cardiac biopsy to confirm. My EF was 20%. My meds are 3.125mg Coreg twice a day, 2.5mg Vasotec twice a day, 40mg Lasix daily and 20mEq K-Dur twice a day. I work and travel and ride my bike and all, but I am wondering about my Coreg dose. Is 3.125mg twice a day typical? Everything I read indicates a higher dosage is typical, but I wanted to ask those who actually take the drug. Also, does anyone use CoQ10? Do you have any thoughts as to its effectiveness?

Tom S, May 2, 2000 - Hi, Perhaps it has been suggested before, but I think a nice service to this web site and our fellow CHFers would be a page dvoted to "freebies" for those of us on SSI Disability. For example, I just learned that folks on SSD (Disability) qualify for a free "Golden Passport" which admits them to any national park without charge. I was also aware that many states offer free hunting or fishing licenses for folks on Disability regardless of age. I am sure there are many other such perks available for us, and all we have to do is find them.I found out about the National Park Service Golden Passport via their Internet site, so I am positive there are more free offers like that if we just hunt for them.

Jon, May 2, 2000 - Hi, Has anyone heard from Robin W, who had a heart transplant last year? If so, can you send me her current e-mail address? Thanks, Jon.

Sharon, May 2, 2000 - Hi, I recently was approved for SSI to begin this month, and for SSD, to take over after the first month of that. I was disabled since 6/98 and applied for both the SSI and SSD in 2/99. I was looking for info on how I would calculate the monies owed to me commencing back from 6/98 just so I know that SSA won't try to gyp me. Also, is it possible for GA (general assistance) to take back all the money that they helped me with during my waiting time for the decision? Thank you in advance.

Tom S' May 3 reply to Sharon's May 2, 2000 - Hi, That's an easy calculation because it is zero, nada, nothing. If I read you right, you are expecting a back payment from the time you "qualified" for SSI. Sorry to disappoint you but there is a 6-month waiting period before you start getting SSD. There is no retroactive payment so don't hold your breath waiting for it. Apparently the folks at Social Security are hopeful that we all will recover enough during that waiting period or drop dead, so they don't have to pay us anything.

Donna Z's May 3 reply to Jon's May 2, 2000 - Hi Jon, I heard from her at Christmas time and she was fine then. I've tried to e-mail her a while ago and it came back to me. I wanted to see how she was doing since she and I at one time have gone to the same transplant doctor. She didn't see my doctor all that much but it's nice to hear what other people have to say about doctors. Robin had her transplant in New Jersey at Robert Wood Johnston Hospital and my doc knew about her transplant. I'll look again for her address and try to get in touch with her again. If I hear from her, I'll let you know. Donna.
Jon's note: Thanks Donna  :-)

Delores Price, May 3, 2000 - Hi, I just wanted to thank Jon and the rest of you for the past few months. I have never posted before but I did get some useful information and comfort from this site. My husband of 36 years was diagnosed with CHF among other things in December. I lost him on April 26 at the age of 55.
     With God's help I will get through this terrible time. I have 2 wonderful children and a beautiful granddaughter that will help. Please pray for me and my family as I will continue to do for you. He is now with God and I know he is well and happy, and I will see him again some day. God bless each and every one of you. I pray that you will find the strength to get through this.

Tom S' May 3 reply to Delores Price's May 3, 2000 - Hi, Delores, Thanks for thinking of us in your time of grief. I know that despite having some preparation and warning, the loss of one you have been so intimately involved with for so many years is still a shock and a big loss. We can only hope that you find solace in the years you had with your husband.

Billie Jo, May 3, 2000 - Hiya, I haven't been here for awhile. My computer was down and I changed my e-mail address. I've been well, still waiting and fighting for SSI. I noticed someone saying that they had applied for SSD and SSI. Aren't they one and the same?
     I was another "inhaler survivor" diagosed with bronchitis when it was actually CHF and DCM the whole time. It was a real educational experience to find out that what they were giving me to make me better was making me 10 times worse and that I was a simple chest x-ray away from the truth!
     Wow, I've got to find those pickles! Here in Washington state we have Tim's Cascade Style Potato Chips with only 70mg sodium per 15 chip serving. They are probably only available in Washington and Oregon since that's part of the bag's logo but they are worth checking out. I ate them before I got CHF, not even realizing they were low sodium! I will get their web address and post it later.
     I took the census job and was wondering if I bit off more than I could chew, chasing addresses that don't exist or are out in the sticks or houses with no numbers posted. Some people are grouchy, others nice. I am getting really tired at end of the day but with open-ended hours, I can take a day off or quit and start any time I need the rest, like today.
     Is it possible to use salt substitute and make our own low sodium pickles? I have been playing with recipes and have a tasty chili and spaggetti and potato salad that even my hubby likes! Do you take others recipes for Kitchen Corner, Jon? I would be happy to share them if you're interested. My spaghetti sauce is still in the works. I am having trouble being consistent with it. Sometimes it turns out excellent and other times not. Do any real cooks have advice? Well, bye for now. Take care, all. Billie Jo.
Jon's note: Take a look at the bottom of the recipes page

Christy M's May 3 reply to Sharon's May 2, 2000 - Hiya Sharon, When I was approved for SSD, I had been receiving disability payments from my employers disability insurance (UNUM) policy. Since I received back payments from SSD from the sixth month of my diagnosis up to approval, I had to repay a lot of that money back to the employer. I'm not familiar with GA, nor am I receiving SSI. At the time I applied for disability with my employer, it was clearly spelled out to me that if I received SSD, that I would be responsible for paying back any "overpayment," which really constituted a double payment from 2 sources. You might want to review the application material you have or contact GA (although I don't have a clue who GA is) with your question. I hope you get it all squared away quickly and as painlessly as possible. Christy M, age 41, EF 20%.

Jon, May 3, 2000 - Hi, Julie Kendall's sister Lori wrote me tonight to let me know that Julie died in her sleep April 18.

     "Julie had been over-working herself the previous week with 2 jobs and I had helped her move into a new apartment over that weekend. She had complained to me then that her arrhythmia was acting up again, but we both just thought it was because she was tired and stressed. After the move, she had several days off to relax and recuperate, so nobody saw this one coming. It appears that her heart just tripped out during the night. She had been recovering so well from CHF and her arrhythmia had been under control after having a procedure done to correct it about a year ago.
     After watching her health improve over these last couple of years, we really thought she was past the worst of it, even though I always knew it could turn at any time. When she first got sick, they moved in with us (my husband Greg and our 2 kids) and lived with us for about a year. I remember it was then that she discovered your web site and how happy she was to find such a great place to learn about CHF and talk to others who would share their similar experiences and frustrations with their doctors. I thought I should write to you and say thanks for her (and me). Julie is now in a better place and free from the burdens of her earthly body. Julie's daughter Harley will be living with us now. If anybody is interested in sending a note or has any questions, they can e-mail them to us at
     Thank you and by all means, encourage folks to send some prayers our way! Lori"

Carolyn B, May 3, 2000 - Greetings, I have not read the posts for some time; Lots of good stuff and information! I just have to chuckle about the pickle question(s). I am a mother of 2 teenagers who have DCM. One loves pickles. We ordered the pickles from the healthy heart catalog and she loved them, all of them. No pickle is really the only low sodium kind. We met somewhere in between, diced pickles in tuna, or a burger. If I buy a jar, they are gone in a few days! A pickle ration card maybe? Wishing you all the best. Take care.

Gwen, May 3, 2000 - Hi, It's pity party time again. I have not had a party for sometime so please bear with me. I am so tired of being tired at unexpected times. It is hard to keep appointments when I never know when I will be feeling so tired when I wake up. This is so frustrating. I am feeling great one day and just because I exercise for 30 minutes on Monday and shopped for 2 hours on Tuesday (never getting short of breath), I collapse on Wendnesday: the very morning I had an appointment with my hairdresser. The Manual is right and it did warn me. Even when I am on top of the world, unexpected necessary bed rest in the morning reminds me to take it easy. Boy, do I hate those words, albeit they are true. Ok, pity party over. God bless y'all for being here.

Leland Y, May 4, 2000 - Hi, About carrying ID with medical information, (and click on "access card") has a wonderful plastic wallet plastic card with all your info, from your name to your medical info; everything! All you have to do is register and within 4-6 weeks, you get a card. It can be updated, revised, and new meds added on. I just got mine today; it's free. Long Beach Memorial Hospital was made famous by Richard Nixon's surgery back in the 1970s, just in case anyone wants to know. Luv and salutations, Leland.

Jack, May 4, 2000 - Hi everybody, I think dill pickles are the worst thing in the world to give up. So I came up with my own dill pickles: You can leave out the jalapeno pepper and adjust the garlic to taste, but these are good and you can eat a lot of them. They taste better after they have aged.

Heidi J, May 4, 2000 - Hi, I wanted to post a message and share with everyone that I am feeling gooooood. I was diagnosed with CHF and cardiomyopathy on December 28, 1999. Jon's web page has helped educate me in more then one way. Thank you for the uplifting messages and newly formed friendships (especially you, Layla!); They have helped lift my spirits. Like an alcoholic, I take one day at a time. I have good days and then days that I fall off the wagon.
     I do want to share the following: At times, reading these posts is depressing. As a result, I visit on occasion versus daily. This emphasizes the importance behind expressing facts, feelings and explanations with gentleness. I know life brings death but my focus in life has always been to feel good about being alive now and enjoying life to the fullest. I am not a religious person and have found inner strength through family, friends and knowledge. This web page is important to me, but most importantly I know it is not the only resource. Jon, are you worried about liability issues in regards to sharing your recommendations? I send my best to Julie K's family. Heidi J.

Jon's May 4 reply to Heidi J's May 4, 2000 - Hiya Heidi, Usually people think I go too far in "expressing my opinion!" <lol> Sometimes questions people ask me would require me to have a very detailed knowledge of their health, family situation, financial situation, doctors' attitudes and experience, geographical location, age, test results and more, before I could give an accurate, useful answer. In those cases, I defer to this message board. I do that for several reasons: I know I don't have the time and energy to get into that much detail with very many people due to my own lack of energy and time, and my need to spend both with my family first. Also, I know that a person can get so many more and varied responses here than I can give, that they will probably be better served than if they just got an answer from me and that was it. Of course, it also depends on just how tired I am when I answer any given message. On a bad day I still answer e-mails, but my brain moves so much slower that it's not much help to anyone! Feel free to e-mail me anytime, though. I be here. :-) If you want some good links to lots of other pages with excellent info, try my Links page or even better, download a whole lot of great links here. Jon.

Tom S, May 4, 2000 - Hi, Here is the the web site for the National Park Service home page:, for those who requested it. Also, I use a Hotmail account and unfortunately the page that shows my e-mails has 2 function buttons next to each other. One is "delete" and the other is "block user" and I apparently hit block user on a whole bunch of folks I had not intended to block. Anyway, I think I have that cleared up now for those who you who were trying to get through to me.

Jon, May 4, 2000 - Hi everyone, Although I hesitated to send out that supplement survey offer on the mailing list, I'm glad I did since it seems a lot of people were interested. I know I'm always looking for a way to shave a few dollars off that bill. Anyway, if you want to check into a free one-year supply of the same CHF supplement (MyoVive) and you live in the Manhattan area, here's your chance:
     The manufacturer - Nutricia - is sponsoring a double blind study in Manhattan at St Luke's Hospital. The study is to confirm or disprove that MyoVive is beneficial for heart patients. The doctor coordinating this study is Dr. Sackner-Bernstein. CHFers who participate in this study will get either placebo or MyoVive for 3 months. After that 3 months, all participants will get MyoVive for 9 months for free. In other words, study participants get 9 months to one year of the MyoVive supplement for free. If you live in or near Manhattan and are interested, call Dr. Bernstein at 212-523-4019.
     If you're interested in the free one-month supply for filling out a survey about your heart condition (as sent to the mailing list), you can call 1-877-myo-vive (1-877-696-8483) to enroll in that survey. You will get a one-month supply of MyoVive free. Jon.

Tom S, May 4, 2000 - Hi, A week before the Civil War battle of Bull Run in 1861, Sullivan Ballou, a Major in the second Rhode Island Volunteers, wrote home to his wife. This is a paraphrase of that letter. I originally edited the letter as a tribute to my wife and 8 children, whom I may soon leave behind. I would hope that any and all of us who have had the unique pleasure of being married to a wonderful, loving, caring and unselfish spouse would find a certain comfort in these words as I have. I only wish I were the original author, as these are truly my heartfelt feelings when I have the time and courage to reflect on my own mortality. For those of you who recognize it, this letter was featured in the Ken Burns public television series "The Civil War" and I think it particularly appropriate in light of the recent deaths of those we have come to know, and hopefully comfort, on this forum.

     "My love for you is deathless, it seems to bind me with mighty cables that nothing but omnipotence can break. The memory of all the blissful moments I have enjoyed with you come crowding over me, and I feel most deeply grateful to God and you, that I have enjoyed them for so long. And how hard it is for me to give them up and burn to ashes the hopes and future years, when, God willing, we might still have lived and loved together and see our children grown up to honorable adulthood around us.
     Never forget how much I loved you, nor that when my last breath escapes me, it will whisper your name. Forgive my many faults and the many pains I have caused you. How thoughtless, how foolish I have sometimes been. How gladly I would wash out with my tears every little spot upon your happiness. But if the dead can come back to this earth and flit unseen around those they love, I shall always be near you, in the gladdest days and in the darkest nights; always, always, and if there be a soft breeze upon your cheek, it shall be my breath, as the cool air fans your throbbing temple, it shall be my spirit passing by. Do not mourn me dead, think I am gone and wait for me, for we shall meet again."

Claire's May 5 reply to Gwen's May 3, 2000 - Boy, Gwen, can I relate to you! I absolutely hate the fatigue thing! I have a very active 4 year old nd a very busy 6 year old. There are some days when I wonder how I can make lunches, do Brownies, go to the grocery store, etc,... I usually end up feeling such a failure. I fantasize about days in bed, don't you? My house is always a mess. I'm just so tired! You are not alone and a pity party is okay! I hope you feel better soon. Peace and love, Claire.

Gus R's May 5 reply to Sharon's May 2, 2000 - Hi Sharon, I think Tom S is correct about there being no SSD payments for the first 6 months of ones Disability period, but you have been disabled for more than 6 months, so there might be some retroactive benefits. As to SSI, this quote from the SSA's "Redbook" sounds to me like the 6 month period does not apply to it: "There is no waiting period required before receiving SSI benefits. Your payments will start as soon as we are able to decide that you meet the eligibility requirements." I'm like Tom in that I don't know what GA is, but I am assuming it is probably a state run program, and they vary greatly from state to state.
     I can tell you about my experiences in the State of Illinois. I was disabled at the end of August, 1992, and had no income except a little interest after September, 1992. In December of 1993 I received a "Notice of Award" for SSI, which said my first check would be for $3,901.37 but since I had received some benefits from the State of Illinois, that check would go to them and they would send me a check for any amount beyond the required reimbursement. There was a time period before they started paying but I think that was due to my assets, which were not spent down to the qualifying level until then, rather than a waiting period. The State of Illinois deducted the amount of cash assistance I had received from them, but not the cost of the meds I received from their assistance program. Two weeks later, in December of 1993, I received a "Notice of Award" for SSD saying that I would receive a check for the month of December shortly, and I did. The money due me for February of 1993 through November of 1993 was being withheld until they had figured what needed to be deducted. They deducted the entire amount of the SSI benefits they had paid to me and the State of Illinois, and 25% of the total SSD amount due at the time of the award for payment to my attorney.
     As to figuring out if the SSA tries to gyp you, they sent me full explanations on everything they did. It took a lot of studying for me to figure it out but I thought I did, and thought I found an error. I calculated that I was shorted one month's benefits. My attorney didn't think so and the local SSA office didn't think so either, but they did explain how I could proceed if I still thought I was due that missing month's benefit. I did pursue it and eventually received it.
     That was awfully long-winded, but what I'm trying to say is that I don't believe the SSA will try to gyp you. They do make errors however, so you should carefully read everything they send you and get explanations for anything that you don't understand and agree with. Best wishes, Gus R.

Claire's May 5 reply to Tom S' May 4, 2000 - Hi Tom, That was one of the most beautiful things I ever read! I have tears running down both cheeks. The human spirit is amazing. Like you, I wish I was the author of that magnificent piece. Thank you so much for sharing. Bless you. Love and peace, Claire.

Al H, May 5, 2000 - Hi, You can find the undedited version of Sullivan Ballou's letter at:

Al H, May 5, 2000 - Hello, Apparently there are 2 paragraphs from the original letter left out (reference his children):

Tom S' May 5 reply to Gus R's May 5, 2000 - Good evening, I never intended to impune the honor or veracity of our noble bureaucrats at Social Security; quite the opposite. I have had very good dealings with them and often wonder if some of the folks on this forum are talking about the same Social Security Administration I have had the pleasure of dealing with. In fact, I had a wonderful case worker who not only allowed me to do all my paperwork via my computer fax but also helped me recoup $5,000 in underpayments after I had been on Disability for a year due to a miscalculation on their part.
     On another topic, thanks to all for the kind comments concerning the Sullivan Ballou letter. I did forget to tell you folks that Ballou died at the first Battle of Bull Run One week after he authored it.
Jon's note: Don't follow that part of his example, Tom!

Jana B, May 5, 2000 - Hello everyone, Are you aware that Jerry Vigus died? I just got back from a cruise and got the e-mail about it. I can't believe this: Julie and now him! I talked to him the day before I left and I just got some Coreg in the mail from him on Thursday.

Ginger, May 6, 2000 - Hiya's, I had an MRI Friday and will get the results Wednesday. Staci, I do not have a working e-mail address for you. Write me and let me know which one you're using now, ok? I have gotten e-mails from people over the last couple of months about when I was coming back to chats. Well, I am back - finally! :-) We have newbies there too that could really use some of your all's knowledge and support so if anyone is interested in coming back to chats, now is a good time to do it! Chat days and times are posted on the chat page. Hugs, Ginger.

Tony P, May 7, 2000 - Hi Jon, It's been awhile since I posted. I hope everyone at home and on the site are well. I am still trying to work full-time as a chef but it seems to be getting tougher. I started working out again and I wanted to ask you if it's ok to do stomach exercises even though I feel bloated most of the time. Will the movement hurt my heart? Thank you for taking the time and effort to do this site. I know it's tough.

Jon's May 7 reply to Tony P's May 7, 2000 - Hi Tony, As far as I know, you should be alright with the stomach movements, but I would avoid isometrics, where you hold the contraction. That will strain your heart. Jon.

Hope M, May 7, 2000 - Hi all, I haven't been here for quite awhile. I have a job where I am on the computer most of the time and when I get home I usually just want to go to bed. I had my annual echo 2 weeks ago. Last year in a MUGA my EF was 26%. By the current echo, it is now 14%. The cardiologist says to go by how I feel, not the numbers. I guess that over time I've been adjusting my lifestyle to accommodate need for rest, and hadn't really felt it was that low. One interesting thing he said and that I'm wondering if anyone else has heard, is that when your numbers are higher, they can be determined very accurately by echo, but when they fall "that low" the echo is less accurate (so they could actually be higher or lower). I'm thinking (fantasizing?) it's just a mistake.
     Anyway, the one change he made is to recommend that I switch from dyazide (a low dose which I take once or occasionally twice a day) to Lasix and Aldactone and to drink orange juice and eat a banana every day for potassium. Does anyone else take Aldactone? I'm wondering about side effects. Thanks, it's always good to know I can come here.

Janet's May 7 reply to Gwen's May 3, 2000 - Hi Gwen, I'd like to join you in that pity party some days. That "fatigue hangover" can be a doosey! I've suffered from many of those and never seem to learn.
     Frank, I'd like to say I don't smoke, I'm not diabetic, and I don't have a cholesterol problem from having too much fat in my diet. I have never had clogged arteries or anything resembling that. I'm a 48 year old cancer survivor. My heart problems are a direct result from my chemo regimen. They say the neuropathy is also from the chemo. The neuropathy affects my legs and my left arm has some serious edema because I have no lymph nodes. I just want some relief and the docs keep saying I'm as good as I'm going to get. I really don't want to accept that. Hence, I grasp at straws.
     One last note for those pickle lovers: Have you tried pickle relish? It's not the same as biting into a big gerkin - nothing beats that - but some brands are much lower in sodium than pickles. Now that BBQ season has arrived in Minnesota, it's sure good to put half a tablespoon of relish (about 50mg of sodium) on a burger. What a treat! But not every day! <lol> Take care all, Janet.

Jennie, May 8, 2000 - Hi, My doctor tells me I'm Ok. I recently had an echo and an ECG. He says they are ok therefore I'm ok; eat and drink anything I like, go get a life, but I ask, what about my medication? Oh yes, "cut it down and cut it out. Congratulations! One thing though, it's funny, I would have said your symptoms were classic heart failure. Oh well, there we go, bye. Next patient."
     I originally went to the doctor with cough, asthma, loss of energy, cramps, leg pains, unable to sleep flat for 2 years, waking up with asthma, chest pains when stressed, fluid retention, falling over and befuddled mind. Two years ago, without an explanation, I was given 10mg Lisinopril daily and sublingual nitro spray for my chest pains, and I improved a lot. I also suffer from recurrent bronchitis and have had pneumonia and pleurisy several times, and ws told I have asthma. Three months ago I collapsed and even taking a shower left me gasping like a beached fish. One doctor stopped my Beckotide. He said I didn't need it and gave me a course of antibiotic. The next doctor upped my Lisinopril to 12.5mg per day and gave me 40mg furosemide. I could breathe and my legs were no longer swollen but I was very weak and could hardly get to the car. I couldn't walk a hundred yards. That was when I found this page.
     I waited for more than 2 months for an echo and taking advice from this page I cut out salt, watched my fluid intake, and started regular gentle exercise. My improvement was very slow and I was always spaced-out. My BP was a steady 95 over about 80. For the last week I have been reducing my Lisinopril by 1.25mg per day, gradually feeling better, but now starting to get edgy, not being able to sleep, and my BP has gone up to 148 over 95 and is steadily increasing. I still watch my food and drink. I have had 4 leg thromboses in the past, one deep. My father's family all died early from heart disease. Am I wishing this on myself?
     If the echo and ECG are ok, am I ok? I feel such a fraud when I just can't keep going. I've always been very active but now I have to go to bed in the best part of the day. I'm not playing to an audience, I'm separated by this illness from my dearly loved husband. I just don't feel well enough to travel. Jon, I don't expect you to post this but I feel better for writing it. Best wishes to all, Jennie.

Jon's May 8 reply to Jennie's May 8, 2000 - Hi, If your left ventricular ejection fraction is 55% or higher, then your heart function is normal. You don't give specifics, so I won't comment. If your heart function is normal, ask some other questions: Do you smoke, drink, get exercise every day? If exercising, are you able to increase your exercise level every 2 weeks? Have you had a complete physical from a neurologist? Have you had your thyroid level checked? Iron levels? Hormone levels? If you are fairly fit and still feel unhealthy, keep looking for the cause. If you are not fit and feel unhealthy, try to slowly raise your fitness level and see what inprovement, if any, occurs. Jon.

Karen K's May 8 reply to Hope's May 7, 2000 - Hi Hope and all, In response to your questions about Aldactone, when I was hospitalized in January my doctor changed my meds a bit. I had been taking 40mg of Lasix once a day. He changed my meds to 50mg Aldactone and 20mg Lasix once a day. The Aldactone works differently from the Lasix. It actually works for a longer period of time throughout the day where Lasix works more quickly and for a shorter period of time. I've had to reduce my Aldactone to 25mg a day as it depleted my magnesium. I also now take three 64mg Slo-Mag tablets daily. It took several months for my magnesium level to stabilize. I also once tested low for sodium and was told to "eat some salt." I'm not sure this is something that affects everyone but thought I would pass it on. Karen.

Jon's May 8 reply to Karen K's May 8, 2000 - Hi Karen, If you tested low for plasma (blood) level of sodium, I don't think eating salt will correct it. I believe I found in The Merck Manual that plasma sodium levels are unrelated to dietary sodium intake. I'd check into that suggestion. Low blood sodium levels can be very serious and a flip suggestion to you about "eating salt" sounds very un-doctor-like.
     About Aldactone, it is a diuretic but 25mg a day is not considered a dose high enough to have any noticeable diuretic effect (from The New England Journal of Medicine). It does have a pronounced effect on the Renin-Angiotensin System, very similar to that of ACE inhibitors and may be considered an ACE inhibitor supercharger at 25mg per day in CHFers. Everyone should listen to Karen about that magnesium level. Not all doctors check it although they definitely should, and it does take up to 6 months to build back up once depleted. Jon.

Don J, May 8, 2000 - Hi, With all the high powered troubles you read on this site, I am sure mine is minor. As a result of CHF, I contracted a severe case of depression which I have been fighting. This is not minor. My problem is that over the past few weeks I have had a lot of daytime drowsiness. This seems to come and go, which leads me to believe that it might not be all meds. Nevertheless, it really troubles me. I have tried caffeine, which just makes me sick. Do you have any other other suggestions besides living with it and cold water? I really would like a little relief.

Randy B, May 8, 2000 - Hi, I've already had CHF and was transplanted 10½ years ago. I just had my annual biopsy last week. My biopsy was fine, a 1 on a 0 to 5 scale but the results of my cath were less than desirable for me. I've had no CAD in the past since my transplant. The test results revealed the beginning of CAD with sparse plaque build-up on my arteries. The doctors said that it could be just a shadow, but I'm fairly positive what they saw was the beginning of CAD. My question is, besides dieting and exercising, is there anything I can do to reduce the buildup that's already on the inside of my arteries? Any medication, procedures, any kind of remedies? I'm still kind of in shock. I've been doing so well for 10 years now, and this is more than just a bump in the road for me. I know that a leading cause of death in transplant recipients after the first year is CAD, and I think once a plaque build-up is established, it's easier for more to stick to. I'm very, very nervous about this.
     Any comments would be greatly appreciated. I'm only 31 years old and have a lovely wife and 2 young children, and I don't want to die soon. I need to watch them grow up and take care of my family. I'm very scared now, Randy B.

Tom S, May 8, 2000 - Hi, I received the following letter today concerning the Park passes for those of us on SSD. The "proof" would be your award letter. There is a whole shopping list of parks where the passports can be obtained and is too extensive to list here.

"Dear Friend of the National Parks:
     Thank you for your interest in the Golden Age/Golden Access Passports. However, both of those passes must be obtained in person. For the Golden Age Passport, you must also bring proof of age. To obtain the Golden Access Passport, you must bring proof of medically determined blindness or permanent disability or eligibility for receiving benefits under federal law. These passes are available only to citizens or permanent resident of the United States. There is a one time $10 processing fee for the Golden Age Passport.
     Please note that it is not necessary to obtain a pass before beginning a trip. You may pick up the passports at most federally operated recreation areas that charge an entrance fee. A list of those national park areas charging entrance fees is attached. The passes admit the permit holder and any accompanying passengers in a single, private, noncommercial vehicle. Where entry is not by private automobile, the passport admits the permit holder, spouse, and children. Thank you for your interest.
     David Barna
     Chief, Office of Public Affairs"

Jean C's May 9 reply to Don J's May 8, 2000 - Hi, Daytime drowsiness can be so frustrating and depressing. As a hint, if you can do something physical it may help. When driving, if you just squeeze the driving wheel together you can wake up and otherwise, just get up and walk to a window or stretch; anything to get the oxygen flowing. Sometimes a little cat nap will do the trick but that can throw your schedule really off so try the active stuff first. I hope this ends soon for you. Hang in there, we're with you.

Brenda H, May 9, 2000 - Hi, I want to share with you what I know about CoQ10. I regularly see a cardiology team to read my ICD, a CHF specialist who treats my IDCM, an endocrinologist for insulin-dependent diabetes, a PCP for depression, anxiety and to satisfy my insurance company, an Amish iridiologist/herbalist for digestive disorders, and an internist who believes in combining traditional medical practices with alternative holistic methods. He takes a lot of heat from the other MDs in town who have basically tried to drum him out of business, but haven't succeeded because he gets results. My endocrinologist and my Amish herbalist both recommended the use of CoQ10 for CHF. However, they didn't tell me the therapeutic amount or the manner in which to take it. The Holistic MD advised that less than 300mg per day would probably not be enough to be effective. He also said that it works best if taken with a fatty food. I take 150mg twice a day and I really think it is helping me. I hope this info helps some of you. Brenda H.

Ben B's May 9 reply to Randy B's May 8, 2000 - Hi, First of all, I know that different doctors interpret caths differently. My doctor told me I had no plaque, then the report showed a couple of 20% plaques interpreted by another doctor. I do know that almost nobody has completely clean arteries, no matter what they say. They have found plaque even in the arteries of teenagers. If you want to try, get a book by Dr. Dean Ornish. I can't remember the exact name but it basically says that by eating almost no fat and I mean almost none, you can reverse the plaquing in your arteries.
     A guy who is having an annual cath for a transplant has a lot less to worry about from CAD than the normal guy on the street. Although nobody wants any kind of heart disease, the worst thing about CAD is that it is symptomless and for many people the first symptom is a heart attack or death. In your case you already have a cardiologist and regular testing, so in this respect you are luckier than most. I would calm down. I am sure your doctors will let you know if there is something to worry about. Ben.

Ginger's May 9 reply to Don J's May 8, 2000 - Hi Don, Please do not think of any problems you may have with CHF as minor. Sure, they could be worse but just because it's not doesn't mean it's minor either, especially if it interferes with your quality of life. First of all, if you're depressed and know it, have you brought this up to your doc? Second, depression in itself can cause people to be drowsy and want to sleep. I just got done with some articles on CHF and depression for men and women. You can read them at Don't let the women title scare ya. <g> It's also about men where depression is concerned. It's about the fourth link down on the page. I hope this helps. Also, you might talk to your doctor about this drowsiness and see if there is a medical reason for it. Stay well ya'll and cya's at chat. By the way, has anyone heard from or about Freddie B since February when he was last supposed to go into the hospital? If so, please let us know, as we are concerned about him. Hugs, Ginger.

Ginger, May 9, 2000 - Hiya's, I got an e-mail from a woman who needs some help. Maybe one of you can help her. Here is what she wrote:
     "I cannot sleep flat. I have a special bed at home and have spent every night there since my diagnosis unless I was in the hospital. How do I travel? I have looked at foam wedges but I need an adjustable bed or need to learn to sleep in a chair. Any advice would be very welcome."
     Thanks. Hugs, Ginger.

Sarah F's May 9 reply to Don J's May 8, 2000 - Hi Don, I tried to send an e-mail to you but it was returned to me as undeliverable. Please check your address attached to your post. I have since read Ginger's post and heartily agree with her. Never think that depression or any other problem for that fact, is not major. To you it is a problem and that is what counts. Depression frequently accompanies heart problems and should be treated seriously. Talk to your doc and find a therapist you trust and come to chat. I think you will find all of the above helpful. Good luck and I look forward to seeing you at chat. Sarah.

Beverly C's May 9 reply to Brenda H's May 9, 2000 - Hi, Would you ask your 2 doctors who recommended CoQ10 if they have checked into "Country Life Q-Gel?" They advertise that "Maxi-Sorb CoQ10 is hydrosoluable and employs the patent pending BioSolv delivery system. This delivery system enhances absorption 300% over that found with CoQ10 tablets, hard shell capsules or other soft gels clinically tested." CoQ10 is expensive and not covered by insurance therefore I am able to take only three 30mg and get an adequate amount. I would appreciate their opinion and am sure many of us are interested. Thanks.

Frank S' May 9 reply to Brenda H's May 9, 2000 - Ciao everyone, I'm delighted that you are being helped by CoQ10, Brenda. When it works, it's ability to relieve one's level of fatigue is truly a blessing. I was able to understand, as were you, that 300mg daily seems to be the proper therapeutic dosage of CoQ10. Since I started taking it almost 2 years ago, the difference in my energy is quite remarkable and even my ability to chase the girls is still there. However, whenever I get close to catching a real sweetheart, I am reminded in a hurry that anything beyond the chase is wishful thinking. All kidding aside, if there are some CHFers who haven't tried CoQ10, it is possible that it could help but only if the proper dosage is maintained. Also, the safety of this supplement has been clearly proven. Later, Frank Smith.

Sharon, May 10, 2000 - Hi, Thank you all for your responces. I figured out what they are doing. They sent my retroactive SSI check to the welfare (GA) office and they will take out what they helped me with during these months from February till now, then I will get the balance. The SSI office said I will receive one SSI check for $543.25, then SSD will take over in July in the amount of $830 a month. I'm still tring to find out if I will be entitled to the balance of SSD from those months. If I deduct the $543.25 from the $830 every month, will I be entitled to that also? Well, again thank you all for your responses.

Phyllis A's May 10 reply to Hope's May 7, 2000 - Hello Jon and Friends, and to you Hope. I love that name. I also take 25mg Aldactone once a day. I was put on it about 2 months ago. I am also taking 160mg of Lasix in the morning and 80mg in the evening and I was still retaining lots of fluid. My new cardiologist put me on it and I did very well with it. It helps pull out the fluid. I pray this has helped you. God bless us all.

LeeAnn D, May 10, 2000 - Hi everyone, I am an old poster but a current lurker! As I get better and my activity level increases (and my kids get older!) my computer time decreases. Anyway, I had my 6 month check up today and because I have had an increase in EF and have had smooth sailing for a year, my doc has decided I should decrease my Coreg, stop my digoxin and use my diuretics only as needed. I'm a little nervous about this, not wanting to do anything to put a ripple in that smooth sailing! I do want to tell any new people who don't remember me my little story:
     I was diagnosed in April of 1998 and had 3 little angels; at that time a baby, a 2 year old and a 4 year old. They said it was a virus. My symptoms dated back for at least 2 years. My EF was under 12 for 15 months. I was on all the same meds and they don't know why I then improved to an EF of 30 and now over 40. I know it was a miracle! Prayer, good eating habits, a positive attitude, good docs and CoQ10. My doc admitted to me today that everyone there was very sad when I came in holding my baby 2 years ago because no one expected me to live. Well, that's it! LeeAnn in Phoenix.

Joe S, May 10, 2000 - Yahoo & hallelujah! I had an echo done yesterday morning for the first time in 1½ years and the results were great. My EF is back to normal, my arteries are far less clogged, my leaking heart is back to where it was about 5 years ago. The only thing slightly wrong was my blood pressure and glucose level. Wouldn't that be something if my heart gets well and I get diabetes? Nah, all is great and I owe almost all of it to this site, doing everything a nutritionist told me to do, exercising every day, eating right, taking all my meds and CoQ10, and moving to a high dry climate. I must have that valve replaced one of these days but at least I'm not living under a 3 month or 2 year life expectancy like the first doc told me. Praise God. Joe S.

Pamie R, May 10, 2000 - Hi everyone, I haven't posted for a long while but try to read the posts as often as possible. This web site has been great support for me and I want to thank you Jon, for having it! As you may remember, I was diagnosed back in July of 1997 with DCM and an EF of 10%. At first it was a great shock to me since I had always been in great health. Less than a year later I was diagnosed with a rare liver disease called PBC (Primary Biliary Cirrhosis). The doctors wonder if perhaps the same virus may have struck both my heart and liver. Either condition can eventually lead to transplant.
     At the moment my EF is 30% and the meds seem to keep me going. I am also a big believer in taking CoQ10. I take 100mg each day. Hang in there everyone! I have had nearly 3 more years to live that I didn't think I would have after my diagnosis. Stay positive in your thinking and praise the Lord every day. Hopefully they will find a cure for our illnesses in the immediate future.

Jana B, May 10, 2000 - Hi, When I got my handicapped parking plaque, it said in the accompanying literature that all I do it show the parking thing to get into National Parks.

Donna Z, May 10, 2000 - Hi, I just got back from my first Vo2 test and am as happy as a clam. The result was in the mid-twenties so no transplant list for now. The doctor was thrilled to see how well I am doing. Now, just a few months ago the doctor had to reduce my Coreg dose from 50mg a day to 25mg a day because my heart beating 42 beats per minute with missing beats. Now things are much better. I'm up to 60 beats per minute and doing much better. The best news was that my doctor and his staff are going to help me get a support group going for our area and they are funding me, plus they will do all the PR work and get different people in to talk to us and pay for refreshments and give me their Wellness Center for all this. What a great group of doctors and nurses I have. They are all so supportive of me wanting to do this and helping me so much to get this going and keep it going. Any suggestions for topic's? I'd appreciate any input. Thanks, Donna.

John Len's May 10 reply to Jana B's May 10, 2000 - Hi, In Virginia state parks and national parks I have to show my state or national park pass to get in, even though I have handicapped plates on my automobile. John.

Jon's May 10 reply to John Len's May 10, 2000 - Hey John, Are you a suspicious looking character? <g> Jon.

Frank S' May 10 reply to Beverly C's May 10, 2000 - Dear Beverly, In my opinion, if it is too good to be true, beware! If this Q-gel was able to have a product which could be 300% more effective than the regular CoQ10 product, my guess is that they would have most of the substantial volume of COQ10 sold worldwide. I am like most people who have very significant health problems in that the cost of staying alive is very expensive, thanks to the pharmacutical and vitamin and supplement folks. For what it is worth, the best "deals" which I have been able to find are:

  1. SDV vitamins in Boca Raton, Florida at 800-738-8482, with a 150mg soft gel of CoQ10 at $111.44 for 120 gel caps. That is 93¢ per 150mg dose. When you add freight at $3.95, it's another 3¢ per capsule
  2. Puritan's Pride in New York at 800-645-1030, with a "2 for the price of one" deal for 120mg soft gel at $152.60 for 120 gels plus 120 free, or 240 gels, which figures to be 64¢ per 120mg, plus freight

     I fully comprehend the part of shelling out a large sum (for me, at least) just for a supplement but each of us must decide if the extra energy which the product delivers is worth the sacrifice. I imagine that I will find out soon if I am paying too much, however a lot of shoppers don't take the time to figure out how much they are paying to the local mass merchandisers for this kind of product. Later, Frank Smith.

Roger G's May 10 reply to Claire's May 5, 2000 - Hi Claire, Hang in there. I was diagnosed in 19997, when my son was 8 months old and I had just quit one job to move 1100 miles to another. I was at work 30 days later but just hung in there. Today my EF is back up from 18 to 52. Attitude is everything. Believe and it will probably help.

Ginger, May 10, 2000 - Hiya's, To everyone who has been wondering and worrying about Freddie B, I finally heard from him and here is what he wrote:

     "I am still at Club Med waiting and waiting and waiting for a new motor. I will be staying here until a new motor becomes available or the alternative happens. Thursday will mark my 11th week, which is not as long as some of the others have been waiting. We are like a small family with a lot in common. It is up to God what happens to me and when. I have placed my future in His very capable hands. I have been meaning to post an update at Jon's Place but just haven't gotten around to it. Lazy, I guess.
     I am on an IV drip of Milrinone which has increased my output volume to where I'm not as tired all the time. It took some time to get adjusted to the stuff but after several weeks my body accepted the fact that it was going to get the med, like it or not. Tell everyone at the chat I said Hi and will remember to check in one of these days. Love in Christ, and Hugs, Freddie."

     So that is where he is. If anyone wants to write to him, his e-mail is It must be very hard to be where he is, waiting like that. I got the results of my MRI and it shows spinal nerve compression, which would cause upper leg pain and numbness but he wouldn't really comment on my calf pain. So when I go to the cardio doc the 23rd I will show him the MRI and see what he says about the calf pain. If it's back related, ok. I just want to know. They are sending me to a pain center to see what my options are because even though he mentioned surgery for this, I told him that would have to be a last result. I will let ya know how it all goes, especially with the answers to the calf and foot pain. Stay well ya'll and you're all in my prayers as always. Hugs, Ginger.

Rick M, May 11, 2000 - Hi, I have begun taking CoQ10 with peanut butter and don't know which is working, but I do seem to have more energy. As Jon knows, I am a very careful shopper and have found my best deal at this web site: Their price is $16 for 90 capsules of 90mg strength, and if you buy 5 bottles, you get one free so their price is far better than AARP or any other I have found. Since it's all made by one lab in Japan, why not get the least expensive? I use both smooth and crunchy peanut putter, alternating types after every meal.

John Len's May 11 reply to Jon's May 10, 2000 - When they show those pictures of sneaky underhanded characters on television or in the movies, that's me! John.

Ken K, May 11, 2000 - Hi, I am a new heart failure patient. I would like someone who could guide me through these first weeks and how to deal with some of the emotions that are not exactly positive right now. Thanks to Jon for this web site so full of information.

Frank S' May 12 reply to Rick M's May 11, 2000 - Hello Rick and everyone, If you mean that ubiquinone, the generic name for coenzyme Q10, comes from Japan, that is my understanding also. However, it is what happens in the formulation of the product in the USA that has cynical old codgers like me worried. When those of us who are on a fixed income choose to shell out money for unregulated products, particularly for our health, then we must be very skeptical. At least that's what my Grandpa told me. My understanding is that capsules are very cheap to make but the chemicals in them are poorly absorbed by the body, where softgels are expensive but the chemicals are more readily absorbed , thus more bang for the buck so to speak. Therefore, what appears to be a great price for CoQ10 capsules could be a waste of money, even though the price is terrific. If my understanding is twisted, perhaps there is an expert in the house. Later, Frank.

Ginger's May 12 reply to Ken K's May 11, 2000 - Hiya Ken and welcome to Jon's. It's not fun having to be in the position to find this place but it's a great place. If you can, try to make it to chat Saturday night. There will be men and women both there that you can talk to and ask questions. You will find a very great support group in the people here. If you can't make it to chat, post what you need or want to know and I am sure you will get some answers from the people here. Also read The Manual. It is a great guideline in itself. Hugs, Ginger.

Gatha E, May 12, 2000 - Hi everyone on the forum, I've just gotta tell you how impressed I am with a new book called "The Cleveland Clinic Heart Book." It's written by heart doctors at the Cleveland Clinic. It is well written, easy to understand, and I feel a valuble tool to learn about heart disease. I bought mine at Barnes & Noble but perhaps your local library can obtain it for you. It includes a big chapter on CHF, medications and newest treatments. It expands on what Jon has on his site. How about it, has anyone else out there read it yet? Gatha E.

Betsy's May 12 reply to Ken K's May 11, 2000 - Hi Ken, I am sure sorry you have these problems. All of your feelings are valid and by acknowledging them kindly, I think you will make the adjustments that suit your situation. I am but a lurker here, but I have bookmarked the site and check in all the time. So many people are knowledgable and kind and will help, I know. If you have a pet, take time to stroke it peacefully. Also, if possible walk through a greenhouse. You will find new appreciation for many things and growing acceptance of your situation. My thoughts are with you today. Betsy.

Barabara's May 12 reply to Ken K's May 11, 2000 - Hi, I was devastated for awhile after my diagnosis for CHF. I decided that if I live one year or ten, that I would not feel sorry for myself. I have spent time since then doing good tasks for other people. I also just want to laugh and do as much as I can. This philosophy has seemed to help me cope beautifully with my illness. There is nothing you can't do as long as you take care of yourself. I never give up but I stay a little mad, which seems to make me feisty to fight this illness. I hope that you can understand what I am saying. Depression is a choice that is so easy for all of us to make, but I choose and try to not let it get me. If I get depressed, I find the first thing to find joy and satisfaction in what I am doing. I apologize for being lengthy but I certainly understand how you feel. I have been living with this condition for almost 17 years. People ask me what I do for a living and I always tell them that I am a professional patient. <lol> May love and joy be with you. Good luck!

Frank S, May 12, 2000 - Ciao to all, I just learned that Puritan's Pride, a large manufacturer of nutritional supplements, has purchased Sundown Vitamins in Florida, which should mean that there will be a substantial saving for folks who benefit from CoQ10. As I mentioned in a recent post, their price for 120mg softgel is about 64¢ per dose. They also have a summer special every year of 3 for 1, which would be more savings. Some would say that old Frank is making a big deal of this situation but I have crunched the numbers and for those of us without supplemental insurance, the cost of medicating ourselves really adds up. Also, as recently discussed, 100 or so milligrams of CoQ10 should not be considered a therapeutic dose. Any amount less than 300mg for most people I have talked to, is not sufficient. Later, Frank Smith.

Heidi J, May 12, 2000 - Hi, For those people with whom I have been corresponding through private e-mails, my system went down and I had to use my recovery disc. Even sadder, I lost my address book and the special heart e-mails I was saving. Drop me a line and I'll do the same.

Jon's May 12 reply to Frank S' May 12, 2000 - Hi Frank, I'm no expert but will add my comments anyway! <g> I must have read a hundred reports/studies/trials on CoQ10 by now and many more web pages with opinion pieces by everyone from doctors to "nutritional reporters." Some things start coming clear after awhile even though there are no trials I am truly happy with using. You can find much of what I am about to say at the International Coenzyme Q10 Association or at my own CoQ10 page. Here goes:

Madelyn J, May 13, 2000 - Hi Jon, I have switched ISPs a couple times, but I think I'll stick with my JUNO address for awhile. I have updates to my bio. The most important one is that my latest echo showed an EF of 50-55%! That's up from 40 to 45% a year ago and 18% three years ago. The doctor credits Coreg. I don't like the stuff because it makes me sleepy and unproductive, but I am satisfied to trade half my brain for a better heart function. I am still on Zestril, amiodarone, coenzyme Q10, Effexor and clonazepam. This mix lets me sleep reasonably well, on my right side anyway, and keeps depression at bay.
     I have a part-time paying job 10 hours per week and I am officially categorized as being in a "trial of work" while on SSD. My arrival at this point is a long story about preparing for termination of employer benefits and SSD as my condition improved. So far, the biggest obstacles to more work are the half-brain capacity and the frequent naps. I also do volunteer work with a local organization and with local au pairs, plus hobbies of jewelry-making and gardening.
     My boys are now 9 and 3 years old, and they play a big part in keeping me moving. I still have live-in childcare. I just wanted to log in as one of the people who took a few years to get up to a normal EF. Maybe it will give others hope when they need it.

Brenda, May 13, 2000 - Hi everyone, I have a question to ask. I am now being prescribed Losartan as I have had reactions to ACE inhibitors. I do not know alot about Losartan except that it will do a similar job to ACE pills. In New Zealand, our government does not pay for it. It costs $56 NZ per month. However I am able to apply for a special grant because I have problems with ACE pills. I am concerned about the side effects that this pill may have. I thought that some of you may be taking it already and could tell me their experience of the drug.

Jon's May 13 reply to Brenda's May 13, 2000 - Hi Brenda, I hope others answer who are actually taking an ARB like Losartan. I can only answer theoretically. ARBs should have fewer side effects than ACE inhibitors across the board. They achieve the same general effect as ACE inhibitors but whereas ACE inhibitors block hormones at the "door," ARBs block them "downstream." :-) Jon.

Rieale's May 13 reply to Gatha E's May 12, 2000 - Hi, You are incredibly right about this book put out by the heart docs at Cleveland Clinic. If you look close, you'll find that my own heart failure specialist, Dr. Randall Starling, helped to create it. Sorry I'm such a bragger, but he impresses the heck out of me. You can also get this book by calling The Cleveland Clinic Foundation. If you want the phone number, send me an e-mail and I'll look it up for you.

Jack's May 13 reply to Frank S' May 12, 2000 - Hello Frank, About the CoQ10, here's an official web site: It has names and e-mail addresses of the major researchers in the world; the top one is Peter Langsjoen in Tyler, Texas. I correspond with him and I think Jon does too. The first thing that really needs to be clarified is the term "generic." Now most people use this term in a disparaging manner because they have no idea what it means. When it is used in the context of prescription drugs, it designates the name of the chemical compound which the drug actually is. Most people buy "brand names" but the "brand" name version of a drug is exactly the same chemical compound as the real (chemical) name of the drug. With CoQ10 that is just the reference name of the basic chemical that is produced by the human body - ubiquinone or ubiquinol. There are several co-enzymes which the Co of CoQ10 stands for. The Q10 is the designator of the co-enzyme.
     There is no more bang for the buck when you buy soft gels. As a matter of fact, there is less bang for the buck because you are only paying for packaging. CoQ10 can be purchased by the kilo from most major chemical supply houses. CoQ10 is fat soluble and you definitely get a better break when you buy the least expensive type. The other type that supposedly delivers 3 times the amount (serum total) by converting it to a water soluble molecule is pure hype and there is no independant data to support the claims of the manufacturer.
     The chemical structure of CoQ10 is simple and you can pay a lot by getting a combination of CoQ10 and vitamin E so you don't have to bother with the peanut butter or the olive oil. But it's your money and you can waste it anyway you see fit. If you really want to learn about it, ask the real experts who do all the research and forget about the advice of the gumpoppers at the health food store. Jack.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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